Is you is or is you aint my Parkinson’s?

Not quite the original words to the song, but you will see what I mean if you stick with me.

It is now day 34 post the sub thingummy whatsit doodah operation on my shoulder, and I did promise an update. Last time I blogged I was fully dosed up (and it showed!) on a mixture of Gabapentine, Ibuprofen and Paracetamol, with my arm in and out of a sling for support. Although the spasms were getting less frequent, they were still there, and still painful, but the pain relief was doing its job.

Of course, as time goes by the pain of all that grubbing about in my shoulder has subsided, so the need for painkillers has been greatly reduced. All well and good until you decide to actually do something. As you know, I have been at war with my left shoulder since early 2015, and now the ‘default’ position of my shoulder is to hunch itself up under my left ear, and to drag my left elbow into my side, all to protect my shoulder joint. Now that the joint is freeing itself up, there seem to be much confusion in the muscles as to what exactly is going on. This has been really obvious at my weekly physiotherapy sessions. I know that I can now raise my left arm vertically about 3/4 of the way above my head, without hitching up my left shoulder to do so. The problem is, my shoulder has forgotten how to do this, so unless I stand in front of a mirror and watch myself, as I raise my hand, up comes the shoulder! It is similar with my other exercises as well. It is very frustrating, because I know that I wont get the best use of my shoulder until I can do the exercise correctly.

The Hunchback of Notre Dame accepts a cheque From Tavistock Lions Club.

In order to relax my shoulder a bit more, and to cut down on further painful spasms, I have reduced my DBS voltage by another 0.1 volts. This has indeed led to a bit more movement, but I can feel that the tremor in my wrist is on the point of  breaking through again.

So, now I have a bit of a dilemma – do I reduce the voltage again in the hope that the shoulder becomes more free in it’s movement, and put up with more tremor, or do I hope that the physio will overcome the lack of mobility in my shoulder and enable me to keep the DBS at its current level? Hmmmmm.

The real problem is that no-one can tell me how much of the shoulder stiffness is now my post operational repair process, and how much is the dystonia caused my the DBS therapy? Hence the blog title – with suitable apology to Louis Jordan! Anyway, the good news is, it is getting better. Slowly, painfully, but it is getting better.

Despite the slow shoulder improvement it has been a mad three weeks or so. In some sort of rough order my diary looked like this:

I have had a conference call with the leaders of the Research Support Network Involvement Steering Group at Parkinson’s UK. I love video conferences because the I.T. always plays up, with people dropping in and out, the video or audio connection working and then stopping and so on. It makes the whole thing quite exciting as to who will be caught out next. I always seem to come back in just as someone is saying “thank you for that vital piece of clarification. Now we really must move on “. AAAAARGH! what did I miss, do I have the courage to ask for a recap??? – trouble is, you feel such a Muppet if you ask again! It is bad enough that they have my ugly mug pop up every time I speak, without the Shrek-like apparition then asking stupid questions…

But it is fun, and I do enjoy chatting with the other members of the group.

Also, we moved eldest son into his new flat in Bristol. He is now right in the middle of St Nicholas Market, which appears to be the  place to be in Bristol at the moment. His move brought about a ‘first’ for  me – my first visit to “IKEA” – and probably my last. Not only was the building so vast as to be intimidating, it is set out like a massive one-way system. If you want to go back for an item, or to a particular area, not only do you need a ‘Duke of Edinburgh Gold Award’  map-reading ability, you also have to contend with about half the population of Western England all walking in the opposite direction to you. This is then made worse by the fact that you have numerous items overhanging your trolley, whilst the relentless oncoming traffic is made up of young couples buying their entire households at once, middle aged couples buying stuff to try to make them look young and trendy again, and elderly couples who, out of sheer desperation, have brought their pre-school grand children to IKEA to get out of the house for the day. With all the ensuing toaster/kettle/standard lamp entanglement, Cath Kidson duvet cover entanglement, and toddler entanglement, you are doomed to failure before you begin, so forget going back. Grab it as you pass or lose it forever!

And don’t even think about asking me about the collection process. We spent what seemed like three days wandering the vast catacombs of the storage area,  pathetically repeating to each other “Row 46, bay 26, shelf Z” in the search for the appropriate bed headboard. When we found the “flat pack” settee that Adam wanted, the box was so large it would have required a second trip in the car just to get it there. By ‘there’ I mean Adam’s new flat. It is at the top of 6 flights of stairs, so the settee idea was abandoned whilst still in Dungeon 17, Bay 99 of the storage area.

It was an experience, and at least I can now say that I have ‘done’ IKEA. Mind you, I have ‘done’ root canal work too, but does not mean that I will do it again.

What else? – oh yes, I have new glasses. I can now read this drivel, so I am not sure just how good an idea that was. Mind you, it is nice to actually be able to see things again, and not just decipher the shapes and take a guess at what you are looking at.

I met up with my “go-to” person at Parkinson’s UK last week. Melissa Rimmel is the Regional Fundraiser for the South West. We had a nice lunch together and then I gave a talk to a local group of carers. Melissa filmed the talk and is going to use is as part of an induction day for new Volunteer Speakers for Parkinson’s UK. Good luck to them, sitting through a video of my waffle!

We have also had three major social events: a 21st Birthday, a Birthday/Engagement dinner and a safari meal out with our friends. I love our family ‘do’s – on my wife’s side the nuclear family is 14 people, so if we go out to eat, we do rather take over!

The safari meals are a little more intimate. I have written about them before, so all I will say is that Saturday night was another brilliant night out! Thank you to our hosts and our fellow guests.

I have also managed to fit in – an acupuncture session; have my stitches out and my ‘flu jab in; Tavistock Goose Fair (Google it); an X-ray on my wrist (no damage found); and to start planning for Nic’s upcoming significant Birthday.

So as you can see, I may well be 14 years post diagnosis, but with a bit of planning, and a bit of forethought, and an immense amount of support from my family and friends, life can be almost normal. You don’t have to hide away from it, you don’t have to run away from it, you just have to manage it, like you would a naughty four year old or a stroppy teenager.

Speaking of stroppy teenagers, Barney wants to be let out.

See you soon.

Get down, Barney!